Every couple of years, I interview my son Jonah, who was born with junctional epidermolysis bullosa (EB). After all, it’s his life I’m writing about, so it’s good to get his perspective. Excerpts of our conversation, lightly edited for clarity and style, follow. PW: You’re about to turn 17.
Low levels of zinc — an essential mineral that supports wound healing — in people with recessive dystrophic epidermolysis bullosa (RDEB) are linked to worse disease, poorer nutritional status, and a higher risk of body-wide complications among those with the rare skin condition, a new study in Spain has…
Selumetinib, a drug that’s approved to treat certain types of neurological tumors, may be an effective treatment for skin cancers in people with recessive dystrophic epidermolysis bullosa (RDEB), according to a new study. Researchers found that selumetinib treatment killed cancer cells in dish-based tests, while experiments in mouse models…
Becoming educated and informed about epidermolysis bullosa is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your EB journey.
There is no cure for EB yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
Get regular updates to your inbox.
